I hear where you are coming from.  After 7 months I don't like to leave the house.  For some reason I feel safe there.  Right now I am with my son and his family in North Carolina.  My son is the only one that can get me out of the house.  I am now thinking of doing some volunteer work at a school near me.  Maybe I can get out of this slump if I feel like I am needed somewhere.

We took care of our spouses during their illness and now there is nothing. We must replace that nothing with something.  Maybe going back to work will fill your days.  We all need to "find a life" without our hubbies.  I think it is the hardests thing we will ever face in our life.

In addition we can't expect people to understand us.  We can hardly understand ourselves.  We are told time will help.  Time will heal the scar, but the scar will never go away. 

And yes we should appreciate the time we had with our spouses.  Not everyone experiences a close marriage.  I know I am grateful for that, and that thought does help.  Hang in there kiddo.  I understand every word you typed.

2

(23 replies, posted in Grief Management)

Wow, do I identify with the last week you had with your husband.  It has been 7 months since I lost my husband and I have many times that the last day of his life goes through my mind like a dvd also.  The picture I can't get out of my mind is his last breath.  At the time I was so relieved for him because he wouldn't suffer anymore.  I try to keep that thought which is rational, but many times the emotional takes hold of me.

I found pictures of him on our computer when he was healthy and so good looking. I even went through pictures of us in college.  We were so young. That really helped.  I have also had dreams where he ends up hugging me.  I wake up and thank him for that.  What I miss are the hugs. 

I am told it will get easier.  I thought these people were crazy, but I have to admit with time I am learning to be alone. I know things will never be normal again, but I must go on for my grandkids.  That is the only thing that keeps me going.  We widows must walk this walk and find a way to go on.  I haven't figured that out yet, but time does help.

My husband at age 66 was diagnosed with state 4 CC.  He lasted 9 months with chemo, radio embolization, and chemo embolization.  He had to stop chemo because it was damaging his kidneys.  I thought he would have at least 2 years with all this treatment.   I sometimes wonder if he would have had a better quality of life without all of this.  The treatments made him really sick. 

I don't know what to advise, but I hope this story might help your dad decide.  What ever he decides, please get hospice.  I think they can help stabilize him with pain etc.

Take each day at a time, and spend as much quality time with your dad as you can.  Each day is precious at this time.

4

(7 replies, posted in Grief Management)

My husband died 4 months ago at the end of this month.  I really feel for you girls that have children still at home.  My youngest is 36.  I just came back from a 6 week visit with he and his family in North Carolina.  Being around a 5 year old grandson and 4 month old granddaughter did me a lot of good.  I was a mess when I arrived, but feel somewhat more centered.  I have been home a week and a half, and.........well.........it is hard to be alone.

What has helped me a lot since my hubby died was a book "Heaven is for Real".  My cousin mailed it to me.  Wow is all I can say.  You see I worried about Pete for 9 months, and my main concern was wondering if he is ok.  After reading this book, I know that he is.  It has been a real comfort for me.  I don't know if this will help anyone going through being cut loose from a spouse, child, or any relative; but it has given me some peace.  I know I still have to adjust and figure out the rest of my life, but not worrying about Pete has lifted a great burden off my shoulders.

I am so sorry to hear about your loss.  I lost my husband of 45 year 2 months ago.  Yes it is very lonely, but after 2 months I am sort of finding some sort of peace.  I know he is in a better place, but I finally came up with a word to describe my feelings and that was "empty".  I still can't sleep on his side of the bed, and his glasses are next to his computer.  I finally started using his towell rack 2 days ago.  Habits are really hard to break.  It is still hard to go to sleep at night, but I pray to him everyday.  I know he hears me.  You will begin the journey, like me, to find a life after hubby.  I don't know what that is right now.  I am told that God doesn't give you what you wish, but what you need.  We don't really know what we need, but I think with his help we will discover that in our journey into widowhood.  I really feel for you and all those that have lost their mate.  It is a journey I wouldn't wish upon anyone. 

Please take care and take deep breaths.  Break down when you can't stand it anymore.  I feel much calmer when I do that.  Tears are the water of love.

Thank you Lainey.  I wish I could help all these patients and caregivers.  I read and identify, but have no advice.  I have been almost 2 months since my husband died.  I don't know what we would have done differently.  I sometimes wonder if he had no treatments maybe his quality of life would have been better.  Who knows.  I just know he was a fighter.  We just can't go back and say "what if".  You must make the best decisions possible and live with them.  My husband was so brave.  He never complained once.  He was the strong one.  Now I really feel lost without his strength.  I wish I could help all of you out there.

My husband had prostrate cancer and died of CC.  We were in the airforce for 10 years.  Lots of planes.  He was also a missile safety officer at Patrick Air Force Base.  He said he inspected many dangerous chemicles  used by the the shuttle and other missile systems.

8

(1 replies, posted in General Discussion)

My husband died of intrahepatic cc about a month ago.  I have lots of zofran pills left over.  Can anyone tell me if I can donate this expensive medicine somewhere.  Do I have to throw it all out?

9

(7 replies, posted in Grief Management)

I lost my husband about 2 1/2 weeks ago.  He battled intrahepatic CC for 9 months.  Today would have been our 45th wedding anniversary.  USAA sent me some booklets on grieving, etc.  One phamplet is titled About the Widows walk.  I thought I would copy it here in hopes that it helps those who have lost a husband.  This is how it goes.

Along the seacoasts of our country you can still see examples of the small observation platforms built atop Early American homes.  From this vantage point one could watch for ships returning to harbor.  In those days a large segment of the population was involved in the whaling industry and other maritime activities.  Many men's lives were lost as some ships never returned to port, and others that did reported crew members dead or missing.  Thus the lookout became known as the widow's walk because so many women were widowed by the sea.

Each of us who has lost a mate will spend a time on the widow's walk.  Now you are pacing that walkway, searching for the ship that sailed out of your life.  Without your captain and without a map you are facing the vast horizon of your own uncharted future.  For me, it was a distant and intimidating view.  Eventually I discovered within myself as you will discover within yourself a compass I did not know I had until I needed it.  In my own widowhood and in preparing this booklet I found no ways avoid the widow's walk.  It is a passage each of us who has been left behind will make.  I did learn ways to shorten the journey and to ease the worrow along the way.  And I want to share them with you.

This introduction of this phamplet brought tears to my eyes.  I know I must learn to stand on my own two feet.  How I will do that I do not know.  But I have no choice.  The only peace I find is that I know my husband is in a better place.  He is no longer suffering.  Now I must find my compass so that he knows I will be ok. 

I hope this will help some of you out there.  We have no choice, but to learn how to survive.

My son wrote them email about his dad.  I thought I would share it with you.

The high school he taught and coached ar are giving him a memorial in the cafeteria.  Everyone will bring food and there will be an open mike.

This is the email. 

As many of you know, My dad (a.k.a. Coach Campbell) passed away yesterday afternoon after battling cancer this past year.   His journey ended very peacefully with his lovely wife and in no better location then at home on the lake. 



He wished for no funeral and has actually donated his body to science.  Yes, after a life of dedicated teaching, he wanted that journey to continue.  However, he is getting no such luck in people not making a big fuss about him.  The community and the high school will be holding a service for him this Wednesday, June 6th at Clay High School (Clay County, FL).   I don’t expect you guys to attend, but selfishly wanted to let you guys know that my dad is awesome and he touched so many lives that they are putting on a big shindig just for him.

I want to thank everyone for their warm regards.  Sorry if I have not responded back to your message or calls, but hope to soon.

Miss you all and as I my pappy would say, “Stay Low”

Yesterday my husband died at 1:04pm. He had been placed in hospice after his bleeding ulcer and was suppose to come home Tuesday.  I called hospice on Tuesday to ask when he was coming home.  They told me he had taken a turn for the worse, and did I want him home.  I couldn't make that decision until I had seen him.  My friendand I drove to hospice.  Once we got there Pete was totally out of it.  The doctor told me he was in what they call (the death throws.  He told me if I took him home I would just have him back there the next day.  But my gut was screaming at me to take him home, and I told my self I was being selfish. I needed to do what was best for Pete. So after all of the talking, I gave in and said he could stay there.  I would spend the night with him.

Within minutes 4 women took me out of the room to a sitting area, and basically told me I could have him at home and have 24 hour nursing care until he died.  It was called something like crisis care.  At this point I was so confused and upset that I didn't know what to do.  But my gut told me I wanted him home for me.  They make all the arrangements and by 5pm he was in his home and safe.  I think he knew he was home.

Since he got home his breathing was loud.  I knew he wanted to spit, but couldn't. I think the nurses thought I wouldn't be able to handle that, but I told them I had been through much worse with all the chemo, etc. 

The next day at some point in time I went outside by the lake and prayed for God to take him.  I knew he wouldn't want to be in the condition he was in. I think it was an hour later that his breathing changed.  I cradled his head and asked if he dying.  The nurse thought he was.  I just held him and told him, he was going to be healthy and well again and always with me.  They allowed me to be with him for over an hour before he was taken away.  I layed in the bed with him and just cuddled with him.  In a strange way it was a beautiful experience.

I am now so much closer to God.  He actually answered my prayer.  I will always be grateful for that and thank him every day.  That spiritual power is so strong.

In conclusion the hospice nurses called the number of the company called MedCure.  The nurses told them the condition of his body.  I was told by MedCure that at the time I applied he would have been accepted, but if he lost 10 more pounds they wouldn't take him.  But I told Pete he passed the test and hopefully his body will teach someone about this terrible disease.  He will be  a teacher to the end.

For all of you out there that are fighting this disease.  Fight it with all that you have, but when you have lost all your strength don't be afraid of death.  I know that in the debths of my being that we will all be in a safe place someday.  I don't know what else to say to you to help you along your journey.  Pete fought this cancer for 9 months.  We had hoped for more, but it wasn't to be.  God be with all of you.  By the way I am not going away.  I will keep coming back to this forum and hope I can help some of you along this journey.  Thanks and love to you all...................janet

Thank you so much for your replies.  Pete is now in a hospice facility.  I want him home, but they need to stabilize him on the medications for amonia levels, itching, and pain.  Once that happens I can have him at home.  Today he was talking but would fall asleep. Then he would wake up and continue to conversation.  He is saying things that are really weird.  He told me the doctor said he was coming home tomorrow.

When he still is itching even though he had medicine for it, I would lay in bed with him and scratch him for a while.  Then I would hold him and he would get real calm and fall asleep.  I feel so blessed that I can do that for him. 

He wants his body donated to science.  We have talked about it in the past, but hospice helped me with all the paper work, and it was completed today. Now I can concentrate on him. 

I am told his amonia levels at some time won't come down with medication, and he will just go to sleep.  He won't wake up again.

I now am on tranquilizers that make me feel like I can handle anything thrown at me.  I also have a long time friend that drove up from central Florida that will stay with me until whenever.  I cherish this because all our family is on the west coast. 

Tomorrow I am told to have a priest come in to give Pete that last rights.  I will continue to be active on this site.  If I can help anyone in this situation, I will try.  Love, and thanks to all of you that have given me information to know what this disease is all about.  It has prepared me for what is ahead for me and my best friend and lover.

I took my husband to the emergency room last week.  He ended up having a bleeding ucler and was really dehydrated.  He was stablized and moved to a hospice unit in Jacksonville.  The external drain has been cancled, and he is tired of everything.  I am hoping he can get stablized with pain medication so that I can bring him home.  Our son flew from North Carolina and really helped me, but he went home last night and said his good-byes.  I am all alone this morning, and trying to keep control of myself.

The doctors say he has days or weeks.  It has happened all so fast.  It has only been 9 months since diagnosis.  Our 45th wedding anniversary is next month, June 17th.  I am going to miss him more than life itself.  This will most likely be my last post.  I thank you all for this forum and all your help.  Janet

The Mayo called again and changed the appointment for Friday.  The past 2 days he just sleeps.  Therefore he isn't itching.  Why is he sleeping so much.  I go into the computer room, and he falls asleep in the middle of typing an email.  This really has me concerned.  Should I be?  Is this normal when the b-rhythms are elevated. 

The only pills he has taken is the Doxepin and one Tramadol.  Is this why he is sleeping so much. 

I can't believe how much he has gone downhill in the past 2 weeks.

The Mayo called this morning.  He has an appointment to put in an external drain at 7:30am.  He had an MRI last week, so I imagine they think it is possible.  I don't think he has any other choice at this point. 

Thank you for all your replies.

I typed this..........

I am under the impression they are certain they can bring down his b-rhythms for more therapy.  But a drain would help with his itching.

I meant to type the word Can't.  They aren't certain they can bring down his b-rhythms.  So is a drain worth it to relieve the itching?

I have posted before about my husband who has intrahepatic bile duct cancer.  He was diagnosed in Sept. 2011 with stage 4.  Since then we have been going to the Mayo Clinic in Jacksonville.  He was on a chemo trial, but was kicked out because his platelets went below a certain level twice.  He has the regular gem/cis one time at X-mas time.  Scans show no growth.  Next he had chemo embolization that targeted a small tumor that was located on the border of the 2 lobes.  Later he had radioembolization to attack the large tumor.  MRI showed that the radioembolization killed about 1/3 of the big tumor.  The chemoebolization did nothing to the small tumor.

About 8 weeks after the radioembolization my husband started turning yellow.  To make a long story short cancer has spread to the smaller lobe.  He had another MRI.

The oncologist read to us the report from the radiologist.  Since his b-rhythems are so high no more chemo or radiation can be done.  The only alternative is to put in an external drain.  The problem is that so many bile ducts are now compromised.  The question is what bile duct to target.  We were also warned of infections these drains can cause.

I am under the impression they are certain they can bring down his b-rhythms for more therapy.  But a drain would help with his itching.

My question to you all is it worth it to put in a drain with all the complications that can arise.  The past few days the itching has really been bad. The doctor prescribed Doxepin and the short acting oxycotton.  The didn't really help.  Yesterday I gave him the Doxepin in the morning and a few hours later 2 tramadol.  That really put him to sleep, but he woke up without much scratching. 

At this point in time, my husband deoesn't want the drain if it won't reduce his liver enzymes enough for more treatment.  My question is what medication is there out there to relieve the itching? 

Another question is the drain with all its side effects worth it to relieve the itching?

I am waiting for a call from the Mayo for an appointment with the radiologist for him to explain the chances he has of putting in a exterior drain with bag that would work.  His report sounded rather negative. 

Can anyone on this forum that has had experience with an external drain on a bile duct inside the liver?  I searched for forum for this answer, but didn't see anywhere from anyone about the location of the drain.

The doctor explained that there are many bile ducts that drain into the main bile duct.  The radiologist would have to make a good educated guess on what  bile duct to target that would drain the most bile.  He can't put the drain in the main bile duct.  I also must add that my husband had cerossis of the liver.  The most drinking he did was in college.  I can't remember the last time I saw him have a beer.

My husband takes 2 dulculax at night.  It has helped somewhat.  I noticed you are from Jacksonville.  We are just south of you in Clay County.  I imagine you are going to the Mayo Clinic in Jacksonville. 

Dr. Sella at the Mayo just prescribed a pill for my husband for itching.  It has really helped with the constipation and helped just a little for the itching.

19

(35 replies, posted in Introductions!)

Pete had his MRI yesterday to see if the radio embolization had worked.  The good news is that it looks like 40% of the big tumor is dead.  The radio active beads are active for another 6 weeks.  So he has another MRI in about 2 months to see if any more of the tumor is destroyed.  This is all good news.

But since the radio embolization Pete has been itching a lot especially at night.  The doctor also said Pete looks a little yellow.  The doctor isn't sure whether to procedure is causing other ducts to be clogged or whether the cancer has spread into the ducts.  I have the impression they will know more after the next MRI.  The doctor prescribed some medicine for the itching to take only at night and I also bought him some Sarna.

In addition that B-test to test the liver functions has rising to 1.5.  And his kidney funtions haven't improved.  The doctor said Pete would most likely not have anymore chemo in the future because of the kidney funtions, but he did say the oncologist would make that decision. 

The doctor did say that Pete could have another radio embolization in the future. 

So in conclusion I am really happy that my husband is feeling soooooooooooo much better.  It is Spring here in Florida and the weather is awesome to sit out on the porch.  We are enjoying each day.  I know the cancer has shrunk, but some of the tests aren't that great.  But to look at him one doesn't know that.  He just looks and acts so much better. 

I hope that others that have radio embolizations will post the results of their procedures.  Maybe I should have posted this as a new post.

My husband had radio embolization almost a month ago.  He has a lot more energy.  In fact he blew the leaves off the roof yesterday.  I am estactic to hear good news from someone else who had the procedure. 

In addition he has also moved the weeds and has given up his naps.  I am looking forward to his MRI in about 3 weeks.

I wish you all the best.

21

(31 replies, posted in Introductions!)

When my husband was referred to the Mayo in Florida we were told to get all his records and fax them to the Mayo.  This we did.  Then we were told again by the Mayo that they needed his records.  We told them they were faxed.  The Mayo  said they didn't have them.

To make a long story short we ended getting all his records and taking them by hand to the Mayo.  Once that was completed our first appointment was made within a week. 

Since you sister is only an hour away from the Mayo, find out what records they need.  Make a copy of them and take the records in personally.  We have found that copies come on handy when a doctor can't find a certain medical record that we know we personally  hand carried to them.

Lud, my husband had radioembolization the last day of Feb.  Today is a week and a day since the procedure.  He was really really sick the first week, but today he is almost human again.  My husband is 66, I sure hope you will survive the procedure better because you are younger. 

He slept a lot and had big problems with constipation.  So you may want to stock up on whatever you use in France for constipation. 

This will all be worth it if we see shrinkage.  We won't find out for at least another month.  Good luck on your procedure.

My husband had his radioembolization last Wednesday.  He is extremely tired and has some pain.  The night after the procedure he had trouble sleeping, but was able to sleep all during the next day.  He also has lost his appetite.  The nurse called to see how he was getting along, and she said his symptoms are normal.  So don't be surprised if you feel really lousy.

He will have an MRI in about a month to 6 weeks so see if there is any shrinkage.  It would be interesting to know how many people on this forum has had this procedure, and what the results were.

rhike,

My husband had an mri to see if his stage 4 cancer was still contained in the liver.  His started in a bile duct within the liver and is now in the portal vein and blood vessels.  That is why he is a candidate for radio embolization.  The surgeon at the Mayo also told him he isn't a candidate for surgery.  He had chemo, but the results was that the tumor didn't grow, but it didn't shrink either.  So if your son's cancer is all contained within the liver,he should definately give it a try.

We were told it is palitive care, and we are hoping it will give my husband more time.   

We were told by the radiologist that 50% of people get shrinkage, 10% have growth, and 40% see no change.  I know those aren't great odds, but I think they are better than other treatments for intrahepatic cc patients that are told they aren't candidates for surgery.

My husband is having radio embolization at the end of the month.  He found out he had intrahepatic stage 4 cancer last Sept.  Since then he has had chemo that really make him sick.  The chemo didn't shrink any of his 2 tumors, but it has reduced his kidney functions.   

So he was taken off chemo and given chemo embolization along with the test to see if he can have radio embolization.  He passed the test (leakage to the lungs)  and will have the procedure done.

Since my husband isn't a candidate for surgery, I was really glad he was able to have this done.  From what I have read radio embolization has a really good chance of extending life.   

We are giving it a try since there are very few other options out there.